Reps. Cleaver, Wasserman Schultz, Miller, Bacon Introduce Legislation to Accelerate Cures for Polycystic Kidney Disease

(Washington, D.C.) - Today, U.S. Reps. Emanuel Cleaver, II (D-MO), Debbie Wasserman Schultz (D-FL), Carol Miller (R-WV), and Don Bacon (R-NE) announced the introduction of the PKD Cures Act to expand polycystic kidney disease (PKD) research at the National Institutes of Health and develop a comprehensive roadmap to identify research gaps and priorities, enhance collaboration between the public and private sectors, and develop a plan for integrating innovative technologies such as precision medicine and artificial intelligence into PKD research and care.

Between 500,000 and 600,000 Americans live with PKD, a condition that often leads to end-stage renal disease and kidney failure, necessitating dialysis and transplantation for many patients. It is estimated that cystic kidney diseases, including PKD, cost Medicare approximately $3 billion annually. The PKD Cures Act ensures NIH is dedicating the resources necessary to develop the next generation of cures for individuals living with PKD.

"Despite roughly 600,000 Americans living with Polycystic Kidney Disease across the country, it is a condition that too often gets overlooked, both in terms of public awareness and medical research," said Cleaver. "There are steps Congress can take to bolster research efforts that will lead to better outcomes and desperately needed relief for Americans facing this chronic disease. I'm proud to introduce the bipartisan PKD Cures Act with Reps. Wasserman Schultz, Bacon, and Miller to begin that process immediately, providing the pathway to an eventual cure."

"PKD impacts more than half a million Americans, but doesn't get nearly enough attention. We must pass this legislation to invest in research, improve treatment, and work towards a cure," said Wasserman Schultz. "I'm proud to introduce this bipartisan bill to support Americans with polycystic kidney disease and their families."

"Kidney disease remains one of the most underrepresented and underfunded chronic diseases in our nation, despite the profound impact it has on hundreds of thousands of families. Polycystic kidney disease demands greater attention and sustained research efforts. This legislation is a critical step toward expanding research and delivering real hope to the more than half a million Americans living with PKD. By advancing this work, we are ensuring these patients are not overlooked and that they have a clearer path toward effective treatments, and ultimately a cure," said Miller.

"Polycystic kidney disease affects thousands of families and currently has no cure," said Bacon. "The PKD Cures Act will expand federal research into the areas experts have identified as the highest priorities and direct NIH to develop a comprehensive roadmap for PKD research and innovation. I'm grateful to work with Rep. Wasserman Schultz on this bipartisan effort to accelerate progress toward better treatments and, ultimately, a cure."

"The introduction of the PKD Cures Act is a landmark moment for the PKD community. Polycystic kidney disease is one of the most common life-threatening genetic diseases and can impact multiple generations within a single family. Yet until now, Congress has never introduced PKD-specific legislation," said Susan Bushnell, President and CEO of the PKD Foundation. "This bill directs the NIH to invest additional energy and resources into the avenues of research that the country's leading PKD scientists have identified as most promising and establishes a working group to chart a comprehensive roadmap for the future of PKD research and innovation. We are deeply grateful to Representative Wasserman Schultz and her bipartisan colleagues for their leadership and their commitment to the more than 500,000 Americans living with this disease. The PKD Cures Act brings us meaningfully closer to the better treatments, and the cure, that our community has long fought for."

"The majority of those diagnosed with PKD will face kidney failure - not because we lack the scientific tools to fight back, but because we have never had the coordinated federal investment to apply them," said Dr. Jesse Roach, Senior Vice President of Government Relations at the National Kidney Foundation. "The PKD Cures Act gives the research community what it has needed for decades: a mandate, a structure, and accountability for results. NKF is proud to stand alongside our friends at PKD Foundation and ask Congress to pass this bill."

"The American Kidney Fund is proud to support the PKD Cures Act. Polycystic kidney disease is one of the most common genetic disorders and creates very significant challenges for individuals and families; it affects about 500,000 people in the United States and is the fourth leading cause of kidney failure," said LaVarne Burton, President and CEO of the American Kidney Fund. "Expanding NIH research and developing a comprehensive roadmap will accelerate much-needed breakthroughs in the understanding and treatment of this devastating disease."

"The American Society of Nephrology (ASN) applauds the introduction of the PKD Cures Act and commends Representative Wasserman Schultz (D-FL), Representative Miller (R-WV), Representative Cleaver (D-MO), and Representative Bacon (R-NE) for their bipartisan leadership to improve the nation's kidney health. This legislation has the potential to accelerate the development of new therapies and ultimately improve the lives of the 600,000 Americans living with PKD," said ASN President Samir M. Parikh, MD, FASN. "It strongly aligns with priorities identified in the kidney community's recent Transforming Kidney Health Research report, and ASN looks forward to working with Congress, the NIH, people living with PKD, and other stakeholders to advance this important legislation and bring us closer to a future free from the burden of PKD."

The PKD Cures Act is endorsed by the PKD Foundation, the National Kidney Foundation, the American Kidney Fund, and the American Society of Nephrology.

Official text of the PKD Cures Act is available here.

Emanuel Cleaver, II is the U.S. Representative for Missouri's Fifth Congressional District, which includes Kansas City, Independence, Lee's Summit, Raytown, Grandview, Sugar Creek, Greenwood, Blue Springs, North Kansas City, Gladstone, and Claycomo. He is a member of the exclusive House Financial Services Committee and Ranking Member of the House Subcommittee on Housing and Insurance.